i need some help for a project...

[anonymous]

i was wondering if there are any users that are parents of children affected by the disease reading this...if there is i have a few questions,
1) how does having a child affect you socially?
2) how does having a child affect you financially?
3) does the child have social withdrawl problems, or other social problems, and how do u handle them?

thank you for your time,
Lindsey

 

[anonymous]

Hi Lindsey,
I have an 11 yo step-son with CF, and I'm currently pregnant praying this baby is not effected, however, both my husband and I are carriers. We have one 3 y o together w/o CF (but carrier)
1) Step-son has no problems socially neither do my husband and I. CF doesn't effect us socially in any way whatsoever. He is perfectly normal emotionally. In fact I have an 11 yo from a previous marriage as well and the two of them are very best friends. My husband and I have been together since they were 7. Step-son stays with us half the year and during that time my son is so much more active because of him. When he leaves my son barely gets away from the X-Box. I would definately say my step-son is more social than my son who doesn't have CF.
2) Now, financially we are not effected any more than anyone who has 3 kids is effected. My husband has been in the military for 18 years and our insurance is free. (THANK GOD!) And we will keep it after he retires.
3) Nope, he has absolutely no social problems whatsoever. He is very well adjusted, confident, brags on himself all the time.lol. I personally believe if you raise your children with confidence, and self worth, they will turn out just fine. I do not believe CF has anything to do with social problems.

Jen<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

I have two children with CF and one without. They are all girls. The oldest is much healthier than the younger one. I believe that I feel such a responsibility for my children that I do not want to expose them to any harm. So I myself isolate them. My oldest is rebelling and wants some space. It is hard. Financially we have been okay because we have Bureau With Children with Medical Handicaps but we dont always have insurance for the rest of the family because we cannot get it due to cystic fibrosis. So that has been a problem. I think just some of the problems with the bathroom and stuff and cough is embarrasing as they are girls and some other things are bothersome.

 

[Emily65Roses]

I don't want this to come off wrong, because it is not intended to be rude or judgemental. It's an honest question. But to the last anonymous poster (3:09pm)... Does it surprise you that your daughter is rebelling and wants some space? <img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Yes, everyone needs to grow and flourish in their own way. It is not always easy for mothers to just let go but it will be done and she is a beautiful, intelligent, very talented girl and I'm sure she will do just fine. Smothering never helps anyone. People need poeple to believe in them no matter what their dreams are. Lessons are learned as we live and I do appreciate your opinion Emily. Thank you.

 

[anonymous]

1) Having three children (the youngest has cf) will affect anyone's social life - CF or not. I think Sami's CF has probably limited my husband and I a little bit as far as taking trips alone or with the girls. We would love to go to Mexico to visit relatives from my side, but have decided it would be too risky at this point. I also have trouble making the decision to go for a weekend alone with my husband because I think, "What about the treatments, the night tube feeds, etc." But this is something I need to deal with for the sake of my marriage and own personal health.

On the plus side, I believe we have met some wonderful people because of CF. We have shared experiences with other CF parents, I have made connections online with other moms. Many friends and family have been so, so supportive and helpful. I believe it has also helped me become more compassionate and understanding towards others.

2) Financially, it has been a difficult adjustment. I was going to return to work after Sami's birth, but after the diagnosis, and with all the care she has needed, there is no way I could work. The lack of my salary and the addition of many meds has thrown us off balance. We originally thought we might have to move, but we have adjusted. I definitely worry more about the future (financially), worry about insurance caps, and what happens when Sami is an adult. All three of the girls have college saving funds. Sami has an additional fund specifically for CF expenditures. We try to allocate money to these funds as much as possible.

3) Sami is still very young (22 months) to judge how CF will affect her socially. I do believe she is blessed with a strong spirit. She is feisty, friendly and smart! I believe she will tackle anything life throws at her with a stong will. We try to keep her busy socially. She attends family parties, goes to museums, zoos etc. I am still hesitating a bit with classes and play groups. I am quite picky in my choices, but she is in a music and movement class that she LOVES!

Maria (mother of three daughters, the youngest Samantha w/cf)